Debunking Myths
with Shellie Mercier, CrossRoads Autism Advisor
Shellie Mercier, CrossRoads Autism Advisor and parent of two children with autism. She gives us her perspective on the piles of information and misinformation about autism.
Myth: a superstition often based on fact, driven by culture. There are urban myths, fantasy myths, and factual myths. In the case of neurologically based conditions such as Autism, the myth factor is alive and thriving. The recent exponential growth of the number of children with spectrum disorders is the perfect food to feed the Autism Myth-Spewing Monster.
- Myth: It’s in the Water...
- Myth: The tools are better...
- Myth: A diagnosis will destroy their future...
- Myth: Vaccines Do Not Cause Autism...
- Myth: There is a Cure for Autism...
-
Myth: The GFCF diet, along with
Bio-Medical interventions,
can eliminate all symptoms of autism... -
Myth: Because you have a child
with a disability, you should expect your
quality of life to plummet... -
Myth: There is only a narrow window
for intervention,
or “the hard boiled egg theory”...
Humans have been telling stories to each other since the beginning of time. It’s how we solve problems, carry on rituals, and, in some instances, find the truth. Fast forward to the present, and we find modern day myths taking shape and perhaps even contributing to the growth of the old ones.
What do you think of when you hear someone reply "that's just a myth"? For most of us, who consider ourselves to be rational, the word myth means “not true.” Do we mean that it is not factually true? Do we mean that we wish it were not true, regardless of the facts?
In reality, Autism has crept in, stolen our children, our future, and is now holding them hostage. There is no ransom. I would pay it if there was. The ransom is all the truths that have yet to be learned.
It is the research that needs funding, only to fall prey to a big bad guy who corrupts the data and leaves us all holding the phone in the proverbial phone booth.
We will go anywhere and do anything to teach, feed, supplement, chelate, immerse in oxygen, inject, or swing our children to a state of comfort or feeling 'just right.' It is like paying the ransom in unmarked one dollar bills, waiting year after year only to find out it just wasn’t enough and the negotiations ended unsuccessfully for everyone involved. This just should not be enough.
Myths Generated from Natural Phenomena
The myths generated by natural phenomenon are as basic as they are fantastic. As we mentioned, there is truth buried in here somewhere. All myths are based in the truth, a simple truth, and things are not what they seem. There is more going on here than meets the eye. Far more.
What then shall we do with the fear and grief and shame that accompany this neurological conundrum? For the time being it is in the hands of the parents – the every day warrior who fights for the simple dignity and honor we all are entitled to. Our children cannot command this themselves, yet. It is the nature of our minds to solve puzzles and make sense out of the unbelievable.
Myth: It’s in the Water...
It’s the power lines. It’s a substance on a particular type of food. This type of fear is insipid. It preys on your heart like the devil himself. It’s like conspiracy theories.
ALL is not well in the world and IT is everywhere. There is no chance of recovery or hope for the future.
This is often accompanied by a flurry of research on the internet, at the library, or in the book store. You will find information that supports your belief. You are not alone. Many others are where you are at. If “the man” knew what was going on it would have been identified by now… sound familiar?
Myth: It’s Your Fault...
Somehow you inadvertently destroyed your child’s ability to be a confident, independent contributor to society. Through some unseen act on your part, you caused your child to be launched over the edge of the proverbial camels back when you added one more piece of straw. If you had not chosen to do that, all would be well in the world. Perhaps you drank a beer or a glass of wine on the 45th day of your pregnancy. Perhaps it was that flu shot filled with a preservative called Thimerasol. Major guilt and shame. If you can just find one thing that caused all of this, then you could present the title to yourself and be done with the whole issue. Yeah, right.
If you adopted your autistic child you are free of THAT shame. But, you are not totally free. You fall victim to another kind. Why did I pay for and choose this child? What in the universe did I do to invite this tragedy? Can I give him back?
Trying to place blame is a coping mechanism we all use to help us make sense of our world. If you can do this, then there is some hope of at least controlling it somehow. If you can blame autism on vaccines, we can fix them. Autism cured. If you can't place blame, then you have to accept that there is something bigger and more mysterious operating in the universe, which can't be controlled or fixed, and this is a whole lot worse than feeling guilty.
Myth: The tools are better...
The daily increase in the number of children who are diagnosed with a spectrum disorder is due to the newest and greatest transforming ways that researchers, doctors, and clinicians can identify and diagnose Autism.
If you now have an autistic child, you may begin to remember and identify kids from your years within the education system so many years ago. However, try as you might you could not come up with more than a few people during your entire school history. I do not remeber other moms talking at the grocery or the park about their concerns for Bobby who was not speaking yet at five. The fact remains, regardless of the precision of the diagnostic tools, Autism didn’t magically appear and become
REALLY distracting in a classroom only after diagnosis. It was there, and it was rare.
This myth travels into the future as well. Just because your child has been evaluated, diagnosed, and is in the process of a treatment plan does not change who he already is. Injured. The formality of this event does not a future destroy or a label make. I assure you, if you do not help your child NOW, your child’s peer group will have all ready diagnosed him and they did not read a file tucked away in a cabinet. It will always be there, regardless of what you call it.
The fact is that Autism is occurring more often today than in years past. Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. Researchers are looking into a variety of causes for this, including genetics, problems during pregnancy and birth, and the impact of environmental factors like viral infections, metabolic imbalances, and exposure to environmental chemicals. It is easy to see why there might be more kids diagnosed with autism when you read the ingredient list for Rice-a-Roni®, Kool-Aid®, Twinkies®, or Velveeta® cheese. We have more chemicals all around us than we did 10 years ago.
Myth: A diagnosis will destroy their future...
- “I do not want my child to be labeled.”
- “People will treat him funny or unfairly.”
- “What if he wanted to get into the military?”
In everyday reality, your child is already a walking label. Educators and peers do not need an official diagnosis to determine that your tiny person needs much more help than the teacher can offer. He either lags behind, turns into THE naughty person who goes to the office every week for bullying, or goes to the counselor’s office weekly because he was bullied.
Take that same classroom and insert your child, but add a formal plan to properly address the problem, and that classroom could be a place of fun, learning, and friendships. Would we do the same with diabetes or cancer? Let's not give the child insulin because he would then be labeled a diabetic. Let's not get chemo because the other kids will laugh when his hair falls out.
The hidden treat is that you, as the parent, will have a place to go and resources to call upon when, not if, something dreadful or inappropriate happens to your child. Indeed it will. Count on it. What sort of plan do you want in place when the time comes for those who are responsible for his dignity to act? I am sure ignorance will work, right?
Consider this. Everybody strives for that feeling of "okay". Not too hot, not too hungry, not too angry, not too stupid. When we stray one way or the other, we try to swing it back to a comfortable level. Some of us learn to do this rather well and our system also happens to have gotten the stamp of approval from society. Some of us didn't learn so well; we use unsanctioned methods like violence, alcohol or drugs, gambling, or sex to get our "okay" feeling back.
Autistic kids also learn that the "okay" feeling is something to strive for in life, even if you didn't teach it to them. Your best bet for making sure they take the sanctioned path to okay is to open the doors and let the fresh air in. Autism is still Autism, even if you don't want to call it that. Calling the kettle a kettle from the beginning gives you years of helping your child learn the sanctioned methods. Not doing so leaves the child on his own to find a path to okay. If you do that, the path he may find might be called beer, vodka and Valium. The okay feeling is coming, how it gets there is much more important than what it's called. When the police call you at 2am to see if you will come and get your kid, would you still think a label was so bad?
Myth: Vaccines Do Not Cause Autism...
All research concerning vaccines proves their efficacy. There is no connection between vaccines and Autism.
Remember the presidential election mistake of 1948? Headline: Truman loses the election. Oops. Truman won, but the surveys were conducted by telephone before the results were tallied. Only the rich owned telephones. Good Grief. Could we learn from the past or just continue to make the same mistakes again and again?
As I pointed out, you as the parents are tuned-in to your own little person. In every other facet of caring for a vulnerable child we are all held responsible to watch closely. It is your job to know when they blink, eat, poop, smile, walk, talk, and form a sentence. If we do not, they die, end up in foster care, or, more commonly, over at dad’s for the weekend. You are perfectly joined for such a time as this.
An entire generation of parents is quite sure their children changed dramatically after they were vaccinated. Shall we stop heeding our instincts? Who would agree that killing brain cells is okay (because mercury kills any brain cells, not just Autistic brain cells), as long as it doesn't cause Autism? I need all the brain cells I can keep and I don't think that should take second chair to the need to bottle three and four doses together and preserve them with Mercury so the shelf life is longer. Last time we checked, your local GIGANTIC pharmaceutical company could handle the minor cost increase. Hmmmm, the brain cells I still have tell me it just isn't making sense.
Myth: There is a Cure for Autism...
It is hard to say this to the parents that believe this, but it is not the truth. Until we figure it out, cure does not fit in this sentence, but what you can do is simply remove the word “cure” and fill in the blank. There are other words to define that goal: relieve, recover, re-mediate, sooth, or improve.
We can't predict the future, nor can we control all the variants that contribute to Autism. There are many forces operating simultaneously in our universe which we have no idea exist as yet. Research is conducted everyday in many different countries; there have been great strides in the past 10 years, but a cure is not close enough for our kids to benefit.
Rather than think about treatment as an "either-or" situation, in which you are either sick or cured, perhaps it can be about a transformation. Rather than having the symptoms define the child, the child can transform these symptoms into their productive counterparts. For instance, a child that is schedule bound could become flexible.
As for the fashion sense (after eliminating all of the offensive sensory items), you may have an out of season, track-pants-wearing, tank-top dude. Beware of the socks.
Now if you want to talk prevention… that is an exciting notion.
Myth: The GFCF diet, along with Bio-Medical interventions, can eliminate all symptoms of autism...
Perhaps for a small population. Perhaps if your only goal is to eliminate the symptoms. If you give enough codeine to someone who broke his arm, the symptoms of the broken arm will be eliminated.
This myth also reinforces the notion that there is only one way to have Autism. Some children can eat only organic foods, rice or goat milk, wheat or gluten free food; and fresh veggies. Toss in an enzyme supplement and it is just like a having a normal kid! Do you think it would be good advice to tell people they could eat whatever they wanted as long as they were taking a multivitamin? Nope. Doesn't work for Autistic kids either. In the overall picture, watching what you eat is a good idea, but it is only one part of a larger plan.
Being the ever observant parents that you are, some red flags begin to fly along the way. To address this, you begin to choose the right interventions in response to these red flags. One intervention is not the answer to all the facets an Autism diagnosis can present. It demands several different solutions in differing combinations on different days. If you were to break your leg, you would not just get a cast; you would also keep the leg elevated, refrain from putting any weight on it, and perhaps take something for the pain.
Trust yourself, for you are the expert on your kid.
What else do you have if not your instincts? You have Autism!
Myth: Because you have a child with a disability, you should expect your quality of life to plummet...
Do not let anyone else set your standard of living. Always shoot for the best possible scenario. They don't have Kellogg's® Rice Krispies at the supermarket and you don't like the others. All of your friends like the others. Would you learn to like the others or go to the store down the road and get Kellogg's®?
You will get so close to the"best possible scenario" that it will define you and yours to others. Most of the parents with spectrum kids are the courageous, creative, resourceful, powerful leaders of our communities.
I would be proud to know you.
Myth: There is only a narrow window for intervention, or “the hard boiled egg theory”...
This myth says:
Early intervention is key. If we do not get him into an insane flurry of classes, therapies and home visits his window of time will shut so hard you could hear the glass shatter. There are certain ages and moments that development occurs in the brain that will never be available again.
The human brain is a malleable, teachable organ for most of its life. Octogenarians can learn to use a computer. Consider the objections you would most certainly have if the person in charge of your education, honor and dignity were to write you off as unable to learn or change after the age of five. If your child is 7 or 10 years old when you figure out what’s really going on, it is not too late. It just means you have more stuff to unlearn before you get to the business of learning it again another way. Would you deny a stroke patient OT simply because they were older than age 5?
I believe that early intervention is crucial for other reasons.
Behavior that develops to navigate our language filled, fast paced lifestyle is tough to unravel. As adults, we recognize that some coping behaviors developed as children, can be very difficult to shake as an adult. Drugs, alcohol, sex, gambling, working, or shopping. Think of the relationship development crisis we all get into and then pay hundreds of dollars to change. Consider these:
- Autism is more clearly detected and intervened upon than an abusive dad or a drunk mom.
- We are all relationship experts unless we are autistic. We just do not know why.
- Many of you are living a daily life of intervention. You just know what to do instinctively.
- We all have down time which we use to educate ourselves. Take time to learn what your child is learning and what the therapists are doing.
- Following through at home is crucial.
- You are the best guide your child can have, and you don't have to pay yourself.
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If you give yourself time to continue to learn what it is they need, you will be incredibly effective at training your child to be successful and productive enough to MOVE OUT!
- If you do choose to go crazy and run around every day and night, try out all the therapies, attend every lecture and/or training that passes through your town, and fill your day with activities to the point there is no possibility of having more than 3 minutes of down time, you won't be alone. Being busy at least makes you feel like you are doing something. A person that is that busy won't notice that there is someone living in their home that will ALWAYS live in their home.
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